I was diagnosed with Hashimotos more than 20 years ago by a locum with some insight after repeatedly being fobbed off by my normal GP. 15 years ago I started getting cardiac symptoms that were dismissed by GP, wasn’t convinced and eventually changed surgery.At this point all my medical records have got lost in the system although rest of family records made it to new surgery. After investigations at new surgery again told nothing abnormal found. Carried on with Levothyroxine medication ignoring all cardiac symptoms until close family members diagnosed with hypertrophic cardiomyopathy. Following genetic screening and investigations I’ve also been diagnosed with HCM and started beta blockers, Cardiologist reviewed ECG from 14 years ago and said it is conclusive of HCM diagnosis and shows lots of abnormalities. GP now wants to stop thyroxine as it increases heart rate and my TSH is ‘always low’. Heart rate 70-80 and BP within healthy limits. I want to stay on current medication as bar extreme periods mostly asymptomatic on thyroid front. Any advice on how to address this with GP welcomed.
Asked for last 3 year blood results but it only listed 1 TFT and extremely limited. Free T4 19.1 range 12-22, TSH <0.5 range 0.27-4.20
Thank you
Written by
SarahJLD
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If you have Hashimoto's then you have at best a damaged thyroid and at worst none working at all. Stopping T4 in those circumstances is irresponsible in the extreme. Where then does your doctor imagine the T4 you need is coming from? If your family (presumably thyroid-fit) have HCM, yours is probably genetically linked and nothing to do with T4 therapy. Your TSH and FT4 tell you nothing except that you are taking the T4 tablets. If you can get an FT3 test, and it shows you in at least the midpoint of the range or higher, then no further changes are needed unless you feel you need them. FT3 determines health not TSH and FT4 in therapy.
In the light of what Diogenes has written you can be confident in the ‘science ‘ during your consultation. And if you say to the GP “I want to stay on current medication as bar extreme periods I am mostly asymptomatic...” Best wishes.. xx
Just testing TSH and FT4 is completely inadequate, especially with Hashimoto's
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with Hashimoto's
Ask GP to test these ASAP
Low vitamin D is very common. Low vitamin D often also have low magnesium. Magnesium is very important for heart
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Gluten free diet can improve irregular/erratic heart beat
Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Thank you all for taking the time to reply, I appreciate it and your information has reassured me to dig my heels in and refuse to have a dose change at the current time.
I will be following SlowDragons advice and initiating private blood tests as I was shocked to discover I was only having TSH and free T4 checked by GP.
And yes Diogenes, the HCM gene has been identified in myself that consequently resulted in extensive cardiac examination and commencing some medication. Some of the symptoms I’d always put down to thyroid are now under control as they were cardiac all along but being medically ignored.
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